Best Of
Re: Abemaciclib Verzenio for Stage IV
This is the investigation of the year! Started this morning with bite of banana and then premier protein drink. I am trying this for next few days. What an odd thing. But if it works ! Stay tuned. Thank you for this suggestion
Re: Suffocating in the waiting...
@mrsnewbold0525 I’m really sorry you’re going through this — you’re not alone. The waiting and uncertainty can be incredibly tough. I don’t post often, but I felt compelled to share this: please consider pushing for a breast MRI or a biopsy now, rather than waiting for an ultrasound that might be inconclusive and delay further testing.
I also have category D dense breasts, and I once read that detecting abnormalities in them is like searching for a snowflake in a snowstorm. No one ever told me that mammograms and ultrasounds aren’t reliable for dense breast tissue, and that MRIs are recommended instead. If I’d known, I would have requested annual MRIs instead of relying on standard screenings that weren’t designed for someone like me.
I truly hope your results are benign. You’re in my thoughts.
harrow
Re: Planning surgery for November 2025? Join the waiting room for support.
@ltam16 We are thinking of you today! Check in when you get a moment to let us know how surgery went and how you're feeling.
Sending gentle hugs!
—The Mods
Switching from Letrozole to Tamoxifen
Hi All,
My sister was diagnosed with ILC stage 2 in October 2023. She had double mastectomy and she been on anastrozole and letrozole since then. She is post-menopausal. Recently side effects of AIs been hard. Her oncologist recommended switching to Tamoxifen. From what I have read Tamoxifen isn`t very effective for post-menopausal women with ILC. Does anyone have been in similar situation, or they have read any recent research on it that they can share. Appreciate your help
Re: Switching from Letrozole to Tamoxifen
Hi dear
My mom was diagnosed 13 years ago with ILC stage 3b she used anastrazole for 7 years ultimately diagnosed with osteoporosis, stopped anastrozole and now her cancer is back unfortunately, doc has started tamoxifen hope it will work for her.
LLots of prayers for ur sister hope some one will show up with uf answer.
pari143
Re: My Husband, My Life, My Love, My Family, My Cancer
Last night I couldn’t fall asleep right away so at 1:21 AM ,I decided to read along here and see how everyone is doing….I had my treatment on Monday and lab work on my monthly visit to Onc, and am back on the Xgeva Injection. He also reassured me my MRI, that the lesion seen on my Posterior Vesatublum was not a new met. This was what has been causing the pain in my right hip groin and low back and causing me to limp and lack of my mobility. He has me being seen by his radiologist and oncological orthhopaedist for treating the pain. So I will be going to do rads for 2 weeks at JFK Hospital. They are optimistic I can get back to painless walking again. This has taken a huge concern off my shoulders being told that met is stable and no progression. Just posting this made me lose some anxiety, then I lost what I had typed, darn this website,🤬. so after I lost my post I closed my IPad , put it aside and turned over and fell asleep 😴. this morning I went to PT,came home and had some pea soup.
@threetree Hey there girl, I’m glad your concerns about Guilaine Barr are resolving.🩵
@candy-678 It’s probably a positive thing that reading the book inspired you to contemplate your feelings on future chemo treatment you may need and how you want to choose whether to continue or not. and you are definitely NOT BAD for having these feelings on how you will choose to face these things in your future with this bitch of a disease. You go girl👍
@mkestrel I’m thinking of you regarding the news on your PET scan. send in coming Breathe Prayers your way.🙏
@goldensrbest Damn that Pneumonitis ! I get that often and just finished another methlPrednisolone Pak. Healing thoughts to you🌷
@cookie54 Hey Jersey, thinking of you🥰
@mara51506 thoughts on you SIL and hoping you get to chat with her soon on how she is doing. I love watching some movies. I watched the Gladiator an old favorite.
Also saying hi to everyone else!♥️
Re: How long have you been Stage IV?
@AJ I am so thankful for not having to have surgery right now. I feel very blessed❤️ I hope you have a great evening!
ssales13
Re: Are you currently (or have you been) in a Clinical Trial?
Short update:
Dr G's nurse received my list of questions and juggled a patient who was doing well so I'll be able to see Dr. G. next Friday. He said those are questions only Dr. G can answer (exactly!).
He was like, "Wow, she's really worried."
I said I saw my liver in the hospital and was shocked by the size of the tumors—I thought they were buckshot, but they were more popcorn-sized and everywhere.
He said, "Try not to worry until Dr. G tells you to worry. He's really good about that."
So anyway, I have slight reason to be more hopeful, and I'll have my answers on Friday. I might have jumped the gun again, but this time two health professionals confirmed my predicament, so I'm justified, haha.
That's it for now.
CBL
Re: Are you currently (or have you been) in a Clinical Trial?
It's frustrating, isn't it? I 100% feel given up on and I'm not happy about it.
I have bits and pieces of information, but not enough for the whole picture. And the bits and pieces aren't even coming from Dr. G, but from surrogates. The answers to the most important questions: What's next? Do I have time for what's next if Talzenna doesn't work? What's the prognosis if I don't? (PA said months, I want to hear that from him) When are scans? etc. —need to come from his mouth. He's the guy with the authority to give the orders, I don't want a middleman.
I sent a whole new list of questions to Dr. G's office with a request for an appointment before my next scheduled on Dec 5th. (if I'm even alive by then). It can be a phone call, telehealth, in person, even a MyChart message at this point, but we need to move on this. If I have months to live, then I have months to try something else. My fear is that I won't have even a month and if we don't act now, I won't stand a chance. The problem is he's only in clinic on Fridays and communicates through PAs Mon-Thu. I knew that would be a problem, but I switched for his knowledge about trials and open mind. I gave up the sense of urgency my last oncologist had and it's becoming harder not to wonder if I did the right thing.
My next labs are Monday. I'm not expecting good news because the yellow in my eyes is spreading and darkening. I'm only willing to give Talzenna, or any drug, 30 days to work. If it doesn't work by then, either it won't work or won't work fast enough. I have a lot of options, but what good are they if I'll be dead before I can try them? The first week of December is 32+ days and my appointment is Fri 5, so the perfect week to scan and get the results in time to discuss them in person.
I did include immunotherapy as one of the possible options, as well as local treatments, expanded access trials, and compassionate use drugs. I'm willing to try anything. I haven't had the opportunity to do research on CU drugs yet, but plan to this weekend.
I figured out last night that 83 out of the last 229 days (April 1-ish) I've been off drugs due to side effects or waiting on approvals to start. That's 36%. Not anyone's fault, but we can do better. That has to have some kind of effect on the growth. A bright spot in this whole thing is the colitis seems to be gone. One less thing to worry about.
Anyway, that's it from here. Ugh.
CBL
Re: Planning surgery for November 2025? Join the waiting room for support.
Just joined. Bmx on 11/10. Diagnosed Oct 7, DCIS in Left breast and LCIS with microinvasion in Right breast. Today is my last day of work before medical leave. Ive been keeping busy but i have a feeling i’m goimg to wake up tomorrow and it’s all going to hit me. Very thankful to have this space as I go through this. Treatment at MSK and apparently it’s 7-10 days until path report post surgery. That’s going to be hard, ie to wait to hear if LN are positive, whether i need chemo etc.